You Can Run, But You Can't Hide

When I was first diagnosed about 30 years ago, MS was some mysterious, archaic, incurable disease that not many had heard of, let alone understood. When my doctor told me good luck and sent me on my way, I knew it was my job to bury it and never look back. After all, if I couldn't fix it, I didn't want any part of it.

I knew there were groups that helped people "cope" with this illness, but if I attended a meeting, it would only mean two things. One, I would surely face my inevitably bleak future, and two, it would mean I've accepted that I actually have MS. I wasn't ready to own it at this point, or ever.+

After many years of hiding, I decided to give one of these MS groups a try. As I expected, there were people ranging from no visible disability to those in power scooters.

But what I didn't expect was the positive attitude of those who had challenges far greater than what I was dealing with. Why were they so happy? They were robbed of their "perfect" life. You would think this would make someone very bitter.

But as I continued to go to these meetings, I learned that these meetings were all about joining forces and helping each other over our hurdles; whether they were big or small, and to find the good in the changing lives we had.

For quite some time, my sweet mother has been in the dark as to what I was going through because I never opened up to her. I was unwilling to admit to her that her daughter was “flawed” in some way. I decided to start taking her to these meetings so she could finally have a better understanding of what I'm going through. 

Five years ago I met my good friend Kelly, who was attending her first meeting shortly after diagnosis. Coincidentally, she also brought her wonderful mom with her. We like to refer to our table as the mother/daughter table.

Sitting in the room full of inspiring people I realized: if I had kept running, I would have never met these awesome ladies!

I don't like to think of myself as a slow learner, but after decades of going through life with blinders on, I finally learned that you can run, but you certainly cannot hide!
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Christine

Christine Kajfasz

Christine has lived with MS for 30 years and is dedicated to raising awareness and funds to find a cure. She is deeply involved in Bike MS as team captain of Team Leap Frog and encourages others living with MS to stay active and strong.

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    dave-peer  Jul 3, 2017 4:57 PM
    Hi Christine,
    Like you I was diagnosed 30 years ago, in 1986. At the time of my diagnosis, there were no MS medications. (I'm unclear here, I'm not sure when Betaseron became available. If it was available, I missed a chance, and took no MS medications.)
    My MS became secondary progressive. I went through canes, Canadian crutches, manual wheelchairs and powerchairs. I stuck it out and worked until 2000, when I went into disability retirement.
    The huge support in my life has been my wife and marriage. At the time of diagnosis, I was married 13 years. Now 30 years laters, she stuck with me, and we've been married 43 years!
  • Kathy Dolan   Jul 4, 2017 8:07 AM
    They...by Kathy Dolan

    Who is this "they" we hear about (?)
    The ones who know so much (?)
    The ones who puff their chests out...
    ...in whom we place our trust?

    "They" say for MS there's no cure
    But what do "they" all know?
    They used to think the world was flat
    Then found it wasn't so

    Don't they know that we need hope?
    We need someone who'll say,
    "We don't know how to fix it [yet]
    But we've come a long, long way...

    We plan to keep on searching
    We'll not stop until we find
    A cure that we are sure about
    Which survives the double-blind

    So this is us believing
    That a cure is almost here
    With God's hand upon us
    This week, this month, this year!"
  • Kathy Dolan   Jul 4, 2017 8:22 AM
    Christine....my dad was always the first to admit that I was flawed, so I didn't have to worry about admitting that. After my dx, I found he was no more compassionate, especially toward my bent to be over-weight. He and mom taught me how to eat, and i learned the lesson well and quite quickly. Toward the end of his life (he passed at 95), I found out the parenting he grew up under (rejection and demeaning), and then I understood. He parented me the only way he knew how, which was under the example his own parents lived before him. I miss him. I can't wait to see him again so I can tell him how sorry I am, that I didn't understand. I always knew the time would come when my caller ID would no longer say, "Parks, dad." His slippers would never again rest in front of his recliner. I just didn't know how much I would miss him. Love you dad!
  • Timothy Muck   Jul 4, 2017 6:08 PM
    Thanks for your post. The best thing to do may be to fight. A non-MS pH is about 7.365. Yes, precise, but your body can and will adjust. Slowly and seemingly unpredictably, but I digress. Is a Whole Foods Market near you? Go in and ask for a product called Body Rescue. This is pH paper. PH paper can also be bought at Amazon.com, Eat only those things that make the pH paper turn black, brown, or dark green when you pee upon it. It will happen and amaze you. If you can become a vegatarian, do it. No beef, now you are working with the Swank diet. No sugar refined, organic or raw.
    You can do it.
  • annette cadwell   Jul 5, 2017 12:10 PM
    christene - thanks. i've never connected with a group. maybe you
    have given me an encouraging push. thanks. annette
  • NordicMA  Jul 5, 2017 2:58 PM
    I was diagnosed with RRMS in 1978. Been on Betaseron for years (forget starting date.) Have taken several MRI's and the last one was this week. Found out I have progressive MS. (Don't know the exact term.) Will start taking OCREVUS intravenously this month. Dosage is every 6 months. I was told I'll be one of the first patients in Massachusetts taking this drug. Trust my neurologist. Been seeing her for over 20 years. Wonder how many people with MS are also taking OCREVUS?.
  • SERINA   Jul 19, 2017 1:53 PM
    Thank you for sharing. I am just beginning. To much pain to deal with.